Participate in a research project

Participants Required:

Autistic children with high support needs, aged 3-18 years and their primary caregivers.

Brief Description of Project:

Autistic children with high support needs are grossly underrepresented in movement intervention research. The lack of motor assessment tools available for use with this population that are valid and reliable may be a contributing factor.

The purpose of this study is to collaborate with autistic children with high support needs, their caregivers, and expert providers, to develop a motor assessment tool (MAT) that is feasible for autistic children with high support needs.
As an autistic child with high support needs, your child can provide valuable lived-experience contributions to the development of this tool.

Participants Required:

Autistic people (some of whom may wish to include family members, carers or support workers).

Brief Description of Project:

Autistic people require access to accurate and comprehensive information to inform their decisions when planning holiday travel. They can dedicate significant time in detailed research and planning, but the information they need can be hard to find.

This research aims to explore how autistic people obtain the information they need for decision making when planning holiday travel. We want to know what information they seek, how they obtain that information, and how it contributes to their decisions about the holiday they are planning.

If you agree to participate, you would:

• Provide 3-4 photographs of a holiday you have planned.
• Have a conversation with two members of the Project Team (approximately 30-40 minutes). This could be online, in person, or by telephone.
• Send us feedback about a month after the conversation on a summary we will send you.
• We would like to record these conversations, but you can let us know if you don’t want this to happen.

Participants Required:

Seeking parents/carers of children aged 5-11 years old who are autistic. Your child does not need a formal diagnosis of autism for you to participate in this study.

Brief Description of Project:

Many autistic children experience challenges with their mental health. We know that parents play an important role in supporting their children’s mental health, and their feelings of confidence to be able to do this is important to ensuring they receive adequate support. We are evaluating a new scale which aims to measure parents’ feelings of confidence in their parenting in this area. To do this, we are asking parents to complete two surveys which will ask about your parenting confidence, behaviours, mental health, and child’s mental health, one now (approx. 30 mins) and one in a few weeks (approx. 5 mins)

Participants Required:

Autistic children (under 18 years of age) who received their diagnosis of autism at 9 years of age or older (i.e., later diagnosed Autistic children) AND Parents/guardians of ‘later diagnosed Autistic children’.

Autistic adults (aged 18 years or older) who received their diagnosis of autism at 9 years of age or older and/or Autistic adults that self identify as autistic (i.e., later diagnosed Autistic adults) AND Parents/guardians of ‘later diagnosed Autistic adults’.

Brief Description of Project:

This study has been co-produced and advised on by neurodivergent people. Research has found that behavioural signs of autism can be reliably observed at 2 years of age; however, many Autistic people do not receive their diagnosis until much later in life. This is particularly common in girls/women, who are frequently misdiagnosed with alternative conditions (e.g., language disorders or eating disorders), or go undiagnosed altogether. When girls/women do receive a diagnosis of autism, it often occurs at a much later age than boys/men, with reported gaps of up to 2 years. One factor that may contribute to a later diagnosis is different expressions of autism. The individual behaviours of autism were originally drawn from those typically observed in boys/men (due to an under representation of girls/women in research), which has possibly created an understanding of autism that is more reflective of this sex/gender. Consequently, the current diagnostic process of autism may not be sensitive enough to accurately identify people who may deviate from this presentation. More subtle expressions of autism have recently been suggested, including increased reciprocal behaviours, richness in language, internalising symptoms and heightened desire for social connection.

The aim of this project is two-fold. Firstly, this study aims to determine whether autistic people who receive a later diagnosis of autism (after 8-years-of-age) show any of the same, or different, early behavioural signs of autism as children diagnosed early in life (by 2.5-years-of-age). Secondly, this study aims to determine whether autistic people who receive a later diagnosis of autism show any of the same, or different, behavioural signs of autism as children diagnosed early in life, but at a later age.

This project will use a quantitative retrospective cross-sectional approach, and a total of 100 participants will be recruited for this research project. Participants will be required to 1) complete online questionnaires, 2) to provide video footage at different age ranges (11-15 months of age; 16-21 months of age; 22-30 months of age; 31 months-5 years of age; and 5-8 years of age), and 3) will be asked to attend one brief appointment (either online or face to face) to complete a number of tasks to assess their thinking, reasoning and problem-solving skills. Data obtained via online questionnaires and tasks, will be used to formulate descriptive characteristics of the sample. Retrospective video analysis will be used to code and analyse video material to identify early behavioural signs of autism. Retrospective video-analysis involves the systematic examination and scrutiny of recorded video footage after the events have occurred. This method has been used extensively in autism research.